Well, my life will be changing shortly. I am a very healthy 72 years old (everyone thinks I am in my 50's and doctors are always amazed at my vitals). Very active in sports and sex. Weigh 168, 5/10. Biopsied months ago after an MRI indicated a large tumor with 'possible' microscopic extension outside the capsule. Bone & CT scans are clear. Gleason 3+4, 12 out of 15 cores positive, 34 gram prostate. PSA under 7, Stage 2 intermediate. Working with MD Anderson in Sugar Land near Houston. I'm torn up over this because I have been so healthy and sexually active - hetero sex being a VERY important part of my life. Hormone treatment and ERBT seems the greater of two evils for me and I have opted for surgery coming up in a week. But, this site (and Tall Allen) has clued me in to the SBRT Cyberknife option and I contacted St. Luke's, the only hospital in Houston doing this procedure, and am waiting for an appointment to visit with them. My fear is that the possible microscopic extension outside the prostate will render me a poor candidate for SBRT. Any thoughts on this?
Also, another question - if I choose to do nothing at all how long can I expect to be pain free from metastatic bone cancer and what might be my life expectancy?
Thanks very much for sharing any thoughts with me.
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If they consider you to be stage T3a because of the microscopic extension (ECE), they may regard you as high risk and refuse to treat with SBRT. But, I would argue that MRIs are notoriously poor at identifying focal ECE, and SBRT treats a margin outside of the prostate anyway. My RO, Chris King, has a clinical trial for SBRT for high risk patients, which, he tells me, is going quite well.
If they won't treat you, Steven Frank at MD Anderson may agree to treat you with seeds plus some external beam radiation. Not a bad idea to schedule an appointment with him.
Thanks for the reply, Allen. Is your RO accepting any more patients into his trial? Alternatively, do you think he might accept me as an SBRT candidate outside of the trial?
I don't think he would consider you high risk, but you can certainly ask him. His high risk trial is ongoing, and he is accepting patients, but I think he would just give you the same treatment he gave me. Chris King (424) 259-8777 in Santa Monica.
Well, it was difficult to say goodbye to MD Anderson and their surgical team but I cancelled my upcoming surgery as I have been accepted as a patient with St. Lukes in Houston. Dr. Jhaveri has agreed to treat me with SBRT after I have an MRI and placement of fiducials in the prostate which will happen in 1 week. I have met with several urologists, three RO's, and two surgeons prior to finding this blog and discovering about SBRT. Thanks a lot, Allen, for your concern and ongoing effort to educate those of us who hardly knew what a prostate was before being told we had cancer. I know a whole lot more now and appreciate it. I feel very comfortable and at ease with my decision. Weird thing is that not one of the many specialists I consulted with ever mentioned SBRT as an optional treatment program including MD Anderson. I will update as I go through the process.
Although MD Anderson offers moderately hypofractionated IMRT, and LDR brachytherapy, they never offerred SBRT for prostate. Like Johns Hopkins and Mayo, they never really focussed on building their radiation oncology departments. I guess they put their focus on surgery and medical oncology.
For what it is worth, I will bring up another option that is very new, just recently approved.
You might want to research Tulsa Pro. It is a form of ultrasound delivered via the urethera while being monitored via MRI. Unlike traditional HIFU, it can reach the entire gland if need be and be contoured to it's shape. A further advancement is that it uses active cooling of the urethra and rectal wall to prevent damage.
I had this done 6 months ago ( total gland). I still can get an erection with meds but I was in need of them before anyway. No incontinence at all.
My 3TMRI done last week showed no remaining cancer in the prostate (although I have mets elsewhere, which was known beforehand. My Gleason was higher than yours with nearly the whole gland involved.
The downsides.....you might have to travel to get it and it is unlikely to be covered by insurance at this time.
" Incomplete ablations in the ablation zone. " and "Multi focal cancers untreated"
Well,I guess that might happen as it could with radiation or brachy as well. It might be a larger concern if my treatment had been focal but that was not the case. In my case the whole gland was treated with Tulsa ultrasound, not focal or partial.
My whole gland had been radiated 6 years ago and there was recurrence so radiation is no sure bet either. Also, the Tulsa uses real time imaging to monitor temperatures to make sure it is properly cooked. Besides that, my entire gland was gone over not once but twice. My earlier IMRT had failed so this looked like a good option.
You say "No valid way of monitoring".
Well, I have follow up PSA and MRI as many of us do. If that is not a valid way to monitor post treatment than what is? Last week I had a 3T MR Iwith Gadolinium.
The report states "Completely necrotic prostate gland. No suspicious nodular areas" and "No metastatic pelvic andopathy".
Why would you infer that there is no way to monitor? Are not PSA and MRI valid?
If they are not then why do we use them?
Next you say "Perpetual active surveillance"
Again, I have to disagree because to some extent all of us who have been treated have to monitor and watch out for recurrence ( with MRI and PSA) . My guess is that nearly everyone who has been treated for PCa has been told to monitor and watch for it to return. This could be considered to be AS, could it not?
"Re dos, cost and toxicity and appropriate salvage"
Well Tulsa Pro can be redone, radiation not so. I could still have CRYO or even surgery.
And yes, there is toxicity as in everything else as well. This is why I could not have radiation after recurrence. My definitive therapy was radiation years ago.
I think that I might not have been clear enough that Tulsa Pro can be whole instead of focal, hence your concerns. People might assume it is just like HIFU, but it is not. To assume so would be equivalent of saying all radiation methods are the same. We know this is not the case. Yes, there may be similarities but they are not the same.
I really believe that Tulsa Pro will be a valuable tool for many in the years to come. Perfect ? No, but else is nothing either. And yes, there are unknowns, just like everything else with PCa.
So you had salvage therapy, not primary therapy. In that case the best salvage therapy is "focal" brachytherapy or whole gland SBRT. As you can see in the table on the bottom of the following link (last row are results for whole gland salvage HIFU), the urinary toxicity and ED are very high as are failure rates.
I thought you were talking about primary therapy, for which there is no valid way of monitoring. For salvage, I suppose any PSA higher than your post-RT nadir is a sign of failure. For primary therapy, a strict PSA cut-off cannot be used because there is no established sign of biochemical failure. MRIs are difficult to read on ablated tissue - you have to biopsy if there is suspicion.
AS is "active" not "passive." It involves monitoring PSA continually and periodic biopsies. It is best done as part of a rigorous program. While I get annual PSAs, there is nothing active about my surveillance. For men who get ablated, there is no established protocol for monitoring, so they are essentially on AS for their lifetime.
Radiation can certainly be re-done focally or with SBRT whole gland. (See link above) More to the point, with a biochemical recurrence rate of about 6 % for an intermediate risk patient receiving primary HDR-BT, it rarely comes up. By contrast, whole gland primary HIFU has a 10-year recurrence rate of about 60% (47% after a re-do) for intermediate risk men:
I know that methods continue to improve, but until there is long-term data, ablative techniques have to be considered experimental and should only be done in the context of a clinical trial.
I'm having a surprisingly difficult time finding a specific meaning for "ablation" in this context--esp. since general dictionary definitions seem to be saying ablation is "surgical removal of living tissue". That seems way too general. I'm more familiar with ablation in the context of interventional cardiology. I think of it is basically killing tissue by burning or freezing, so I was taken aback by your saying radiation therapy wasn't ablative. I guess this is a semantical question--I guess I know that HIFU or cryotherapy are what you'd consider ablative therapies.
Ablation is the destruction of tissue. Surgery doesn't destroy tissue, it removes it. Radiation, as it's used, doesn't destroy tissue either - it may destroy cancerous tissue but it preserves healthy tissue. I have a healthy, supple prostate after RT. HIFU, Cryo, IRE, FLA and the like attempt to destroy all tissue in the ablation zone, at least in theory.
You are correct that radiation is not ablative. The point I was trying to make is that radiation treatment can be incomplete as well. I would have thought that was apparent.
One thing I noticed was that one of your studies was thirteen years old, rather dated. Also, it dealt with HIFU, while I had brought up Tulsa Pro. They are not the same. I brought up apples and you responded with a critique on oranges.
Radiation, at modern doses, certainly is complete in the treated area. Local recurrences are very rare with modern doses of radiation. They are not rare with HIFU. Nothing, not radiation, not surgery, and not ablation, can treat anything outside of the treated area. The point is that ultrasound energy will not even kill all the cancer in the treated area.
Tulsa Pro is just MRI-guided HIFU. If HIFU doesn't kill all the cancer in the treated area, Tulsa cannot either. It is not apples and oranges.
This has been studied at several teaching universities with med schools, including Johns Hopkins, hardly a fly by night place.
J H is training doctors to use this as another tool. Maybe not the ultimate, but something useful to many. At one point in time brachy was unproven, radiation was unproven, da Vince was unproven, etc etc etc.
Yes, I understand that when something is new there are practitioners who overhype it and I can think of one or two in the ultrasound field who are masters at self promotion.
Still, I feel to paint every aspect of that treatment in a negative way is detrimental to many who may benefit from it if they knowingly understand it.
Unfortunately, practicing at a top institution does not guarantee that doctors will be fully informing patients there. I have personally heard many urosurgeons at top institutions underplay the risk of surgery. He doesn't have to "paint every aspect of that treatment in a negative way." He only has to provide a balanced picture.
Proton has same toxicity as IMRT. Loma Linda is last place I'd consider. If you are convinced you want protons (more, expensive, longer duration, same toxicity), go to Scripps.
Great advice from Tall_Allen...our PCa guru! Just as some food for encouragement, I was diagnosed with Gleason 8, T3a, and treated almost 15 years...still counting and 'raising Hell' here in Thailand!
My husband is G7 and he is refusing the surgery and any hormone shots as he is only 54 and looking for quality of life. I’ve researched and believe that his life expectancy is still very good doing the other forms of treatment. Keep exploring and researching and don’t jump into surgery if it’s not feeling right to you. PCa is slow growing so unless your PSA starts doubling quickly you have time to decide.
Dattoli Clinic in Sarasota Florida has sort of pioneered that recipe. IMRT is not quite so focused as SBRT. Though they really go out of their way to focus their IMRT.
The are very aggressive if that is what you are looking for.
They treated my lymph nodes with radiation. I am not so sure in retrospect I would repeat that part of the treatment. It apparently killed off most of my non-replaceable CD4 T-cells.
But that is an option.
Dattoli is very proud of his skill in placing the brachytherapy seeds. And he does a whole lot of it.
+1... the OP has a good profile for HDR-BT monotherapy with a possibility of adding 6 months ADT. I would suggest a PSMA scan to ensure no LN involvement. If LN+, then would add IMRT to the prostate bed and increase ADT to 18 months.
Sounds like you're an ideal candidate. If you can find a "Varian EDGE" machine nearby (besides IG/IMRT/ARC, it's also used for SBRT) - the possible ECE can be built into the treatment pattern. Basically the treatment consists of coverage of the prostate bed, prostate and surrounding tissue with the first 25 treatments, then concentration on the prostate and the tumor for the final 20 treaments (the "boost" phase.) The boost phase is done to achieve the same results as brachy/IMRT.
Someone on a FB prostate group posted a link to a YouTube talk by Mark Scholtz MD ("The Key to Prostate Cancer") where he strongly came out as an advocate of this treatment, especially as an alternative to surgery. He stated pretty much what I've been saying for quite a while - radiation treatment has come a LONG way in the past decade, and the studies quite often referred to in comparisons (BRACHY vs IMRT, etc..) are comparing no long used radiation treatments vs the other therapy. His results with IG/IMRT have been superior to surgery hands down. You might search under his name on Youtube.
Worth considering. I found a brand-new cancer center associated with University Hospital of NJ - about 5 miles from my house. They had ALL the latest radiation equipment, and put it to good use. Might also have helped the radiation tech doing most of my treatments is a good friend.
Read the paper - if you have any questions - please let me know. Right now I have no real side-effects I can attribute to the radiation treatment - most all can be attributed to the ADT, which hopefully will be over in another 9 months.
Why would anyone do that (unless it isn't available) when they can get it done with no increase in toxicity, at much lower cost, and in only 5 short treatments?
The thinking was (and I believe still is with the majority of radiologists) that the longer term lower dose per treatment regieme works better with killing the cancer cells when it's done with ADT at the same time for high-risk cases. There are some studies out that showed this. That may well be changing since more facilities are capable of SBRT, and some time has passed so they have some actual numbers on results. I think part of it also is - since I had a possible ECE, and was G9, the radiologist wanted to be able to treat outside the margin of the prostate, and the prostate bed. I think what I've read is SBRT is more targeted to a case of a primary tumor without extension outside the prostate. I'm a high-risk G9 (or 10..) with possible ECE - and a radiologist I trusted recommended this treatment and expects good results from it. The paper I mentioned above (and others I could suggest) confirm that choice.
That's the tough part of picking any treatment - look for studies with "solid" data - and the data the study is based on is too old and the result of out of date treatments. Look for studies on current treatments modalities and the data available is too "new" - not enough time has passed to see what the actual long term results of the treatment are.
I'm not sure what the cost difference is - no doubt there is one - but if SBRT is proven to be equally effective - then I imagine Medicare will start pushing for it to be the treatment of choice for radiation. I didn't get the feeling that the treatment I had is going to be abandoned any time in the near future.
It's important to understand the situation of each patient. Yours is very different from the OP's. What you say makes sense for a Gleason 9, but not for a Gleason 3+4 (which is what the OP is). SBRT certainly can treat any desired margin outside the prostate and is contoured precisely to the shape of the prostate, including any extracapsular extensions. SBRT is being used for high-risk patients now, but such use is experimental (Dr King tells me there have been no local failures so far.) It's use for intermediate risk patients is well documented, however.
The tried-and-true for high risk patients is certainly brachy boost. There is some very good data on it. It has been practiced for over 30 years.
Tall...you and i have communicated several times in the past to my benefit. I have been reading all of these very technical posts involving SBRT because i have reached the point where i am considering starting treatment and SBRT is at the top of my short list of the type of treatment to consider. I have been on AS for 4 1/2 years...am now 79 years old..soon to be 80...and am resisting the decision to start any form of treatment. Nevertheless my last Urol from Emory...head of dept there...recommended EBRT when my PSA exceeded 10 solely on that basis...inc in PSA...Instead, i requested and received on 7/3/19...a fusion targeted biopsy which showed a continuation of what i have seen in a blind biopsy in May,2016, and 3 annual 3TMRIs since... GS 3+4=7 ...stage T1c...PSA doubling time of 5.9 years...and cancer<10% in the two lesions i have both confirmed by 2nd op from Johns Hopkins. That said my pure PSA went from 9.42 at end of 2018 to 12.95 in May,2019 and in September,2019...back down to 11.75% .I have now asked my Urol to obtain the Prolaris biopsy report and am awaiting results.
At my age, and with T2 diabetes and heart disease,Im not excited about starting any form of radiation,but i dont want to be stupid about it. I dont really expect to be around in 10 years so im trying to decide what i have to gain by treatment going forward. I am in good physical condition ,especially for my age, so i may get lucky and live beyond 90 but, to be honest, who cares?
Just wondering what your advice would be now. Im inclined to meet with a Rad Onc who specializes in SBRT to get a firm understanding of that treatment method,but wont do that until i see what Prolaris says.
Appreciate any feedback you can offer. Also wonder if you know any ROs who specialize in SBRT in and around Atlanta area. I have identified 4 so far. Thanks for your help.
I think you should consider sticking with AS. Klotz recommends against using PSA to make a treatment decision. It can lead you towards a biopsy (which you did), but not a decision.
Youu may be interested in what this MSK nomogram tells you about life expectancy if no treatment:
Adam Nowlan and Chad Levitt...Piedmont group..Atlanta
Pretesh Patel...Emory Cancer Inst..Atlanta
i have actually used the nomograms on life expectance you suggest at Sloan Kettering and they alway say ....including last month...that i have a 98% of living 10-15 years or dying earlier from something other than prostate cancer.
thanks anyway. i will probably see one of them...Nowlen...just to get more familiar with SBRT but i really dont see myself starting treatment unless the Prolaris test is bad.
Tall...After looking at my fusion targeted biopsy results, getting a 2nd from JH which didnt see one lesion as severe as the Emory pathologist, and meeting with my Urol who continues to recommend i start radiation therapy, I decided to get a Prolaris Biopsy Test which i did. I just received the test report and while i dont know what i was expecting or hoping for, it was worse than i expected... My Prolaris Molecular Score was 4.4 which it defined as being at the 90th percentile for NCCN Unfavorable Intermediate Patients and NOT recommended for Active Surveillance. To continue to "qualify" for AS it would have had to be less than 3.7 . In the Patient's Risk Assessment portion of the report it said that My Disease Specific Mortality risk with Conservative Management is 7% DSM which is considerably over the Median Risk .
In the Patients Results Interpretation section it said
1.Prior to Prolaris testing this patient's Prostate Cancer was categorized as Unfavorable Intermediate Risk.
2.After Prolaris Risk Assessment risk of DSM is above the Median DSM risk for the typical Unfavorable Intermediate patient. This patient's risk exceeds defined Active Surveillance range.
My Urol continues to recommend i start some form of Rad Therapy and i have continued to resist due to my age...i will be 80 in March...and my heart disease and Type 2 diabetes. Every indicator i have seen in my case strongly suggests that it is highly unlikely that i will die due to prostate cancer vs some other element of my health. That said I am in good shape for my age and neither my Cardiologist nor Internist have exhibited any concern about my health as it pertains to what they are treating me for..
At this point i am not sure how best to proceed. My Urol told me he didnt see any point in following my case if i dont see myself ever starting treatment of some type and suggested i agree to start RT if my PSA increases to 15. It was 11.75 in May, down from 12.92 in December,2018. I have learned over the years that PSA doubling times is an important measurement in evaluating PC progress and mine is nearly 5 years when i last computed it in the fall of this year.
Although i dont really see myself deciding in favor of treatment , and the older i get the more my age makes that decision for me, I wonder if "never say never" is a smarter approach for me at this point.
My current game plan is :
1.Meet with my Cardiologist and Internist for a serious talk about how they see my future insofar as my heart and diabetes are concerned.
2.Find a new Urologist away from Emory ..to look at my case and establish a protocol to continue following me via periodic PSA tests, maybe DRE and possibly a future 3TMRI....my last one was December, 2018.
4.Identify one of the 4 SBRT docs I have found in my area and go to see them about SBRT for my case so i at least have a more informed basis to think about treatment vs no treatment.
I am at this point all about avoiding side effects from any sort of treatment as my top priority. I have had ED for a couple of years already so that cant really get much if any worse. The other types of side effects are what I want to really avoid ,especiall at my age.
I was wondering if you have had experience with the Prolaris report or know how it is regarded in terms of accuracy, validity and influence in other PC cases. I have made it 4 1/2 years on AS and hate to switch now, although i guess i would be moving into Watchful Waiting if i continue to deny treatment.
Thanks for any feedback or thoughts you can provide and Happy Holidays to you.
I think Prolaris is pretty good, although there are cases where the other two (Oncotype Dx and Decipher) give discordant results.
As an anecdote, a man in my support group was 80 when he had SBRT. He seems to be doing well. He had some early urinary issues, which have cleared up. I think that radiation will hasten the age-related decline in urinary function. Older men heal from the effects of radiation less quickly than younger men, especially when there is diabetes.
Tall....thanks for your reply. I have taken the life expectancy questionnaire you cite,but it has been about 3 years ago so i took it again tonite and it still shows that given my vital stats only 2 or 100 will die from PC at both the 10 and 15 year from now point. I still may look into SBRT, but do you think i should just forget even having periodic PSA tests going forward if i am not going to change my mind about starting treatment? Happy Holidays!
Ask your oncologist. There may be urinary issues (retention, blood clots, pain), bone pain, fractures, edema, lethargy, blindness, neuropathy, liver failure... it depends on the path your cancer takes.
Sorry i asked! LOL Thanks. i will consult an Onc so i can at least begin to watch for any signs that my PC is starting to show. Appreciate all your helpful advice in the past.
If you are on the edge and it is convenient for you to do so, there is no reason not to inquire on SBRT or Brachy. You don’t want to ask your self why you didn’t six months from now. I am only eight months post SBRT treatment in St. louis and quality of life indicators are good. I am 62. I discounted surgery because of too many acquaintances with challenging outcomes. There are now good 7-10 year survival numbers for Removal, IMRT, SBRT and Brachytherapy. Most insurances cover all of these, but once you step beyond it can get expensive, if this matters to you. You should read the comparisons. Tall Allen has posted links to many of these studies. I recall minimal differences in survival rates, with these four but there are differences in side effects. I discounted Brachy because of the long time under anesthesia for the procedure. I discounted surgery because the two urologist I met with were arrogant assholes. Skill is probably more important that personality, but I gave up after two. My PSA has dropped to 2 after six months and will get to a baseline after a year. No sexual or urinary effects. Keep in mind that studies are generally at the high volume academic programs and stepping into a smaller program may presents greater variability or risk. Please post again after you meet with the Rad Onc and tell us what you think. Make sure you get his treatment/recurrence numbers and those of his/her team. I had the SpaceOar and believe it is standard protocol now. I also had prophylactic Cialis 30 days before and 90 days after to preserve erections. Guess it worked. No looking back
I can tell you from personal experience that there are limits to the dependability of MRI findings. In my case, the pre-op MRI said I was "suspicious" for extracapsular extension, but this turned out NOT to be the case on the surgical path.
This article from a few days ago shook some people up--apparently not published yet (and based on the comment of the oncologist who commented, skill of the radiologists (like most things) is variable.
There is great variability in imaging. I had an MRI from a 1.5 tesla machine and one from a 3 tesla, both with the software for prostate imaging with and without contrast. The quality difference in the images was pretty dramatic. It was the difference between a tube and a hidef digital TV. This group is old enough to know what a tube TV is. The patient needs to know what they offer and get to a place that has the strongest magnet and prostate specific imaging software. Second must have is a reading of the images from someone who specializes in the prostate, and then a second reading from one of the larger cancer centers. They all offer second reads for very little money, usually covered by insurance.
When MRIs are only 1.5T, results are similar to a 3T if they use an endorectal coil with it. Either way, it is highly dependent on the expertise of the reader, and it has poor ability to discern anything less than about 4 mm.
For quality of life and outstanding results for intermediate risk, I would look carefully at HDR brachy monotherapy—as well as SBRT. They can treat a very precise margin around the prostate with HDR brachy. My 3T MRI showed what they thought was a microscopic extension — it had some doctors calling me intermediate advanced. I got a second opinion on the MRI by Dr Weiss at Cornell Weill in NYC and he attributed the concern to camera shake. I was leaning toward SBRT but Dr King wanted to also treat me with hormone as well. The pioneer in HDR brachy monotherapy, Dr Dimanes at UCLA, firmly believed, after a thorough examination with ultra sound, that I was squarely intermediate risk and a perfect candidate for HDR monotherapy. Based on a gut feeling—as well as the fact that this was the first doctor that seemed very confident in his recommendation—I went the HDR brachy route. I ended up choosing a student of Dr Dimanes, Dr Wang, who is working out of Kaiser Santa Clara and is in my health plan. I would recommend him highly based on his success rates and vey high number of procedures for a young doctor. Not to mention he was trained by the leader in HDR brachytherapy monotherapy. Ultimately, it’s been nearly a year and a half since I treatment and I have had no side effects at all. Let me know if you need any more information. You surely have good treatment options, other than surgery, which will spare your quality of life. I would put your full energy into meeting doctors who offer these alternative treatments in person. Study up on all facets so you can ask the most detailed questions of each doctor. Once you become your own advocate and take charge of your treatment decision, the right answer will come to you through the process.
Good lord, I have had 4 gold fiducials placed in my prostate in prep for SBRT Cyberknife treatment. Last week I had a couple CT Scans and another MRI to perfectly outline and prepare the radiation target. Just received a call from my Doctor with St. Luke's in Houston telling me that because my large Pc tumor abutts my rectum that he won't be able to treat me with SBRT. There is a small chance of damage to the rectum that will manifest itself in 2 to 4 years leading to rectal surgery and a possible ostomy. Instead he suggests Lupron and EBRT - two treatments I was specifically trying to avoid. Alternative is RP. So I'll be getting back in touch with my MD Anderson surgeon to discuss this with him. I can't help but wonder if having 4 fiducials in my prostate will interfere with robotic surgery or the use of seeds. Tall Allen, I'll be calling Steven Frank very soon.
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